Our Surgery Experience: Lip, Palate, and Ear Tubes

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Written by Kristin on 22 Oct 2014

Preparing for a planned surgery with your child is like being pregnant and obsessing over labor and delivery. I wanted to hear every cleft palate surgery experience. I wanted details. I wanted to know what to expect including worst case scenarios. Mainly, I wanted to know that my sweet girl would be okay and that somehow I would be able to help her through this.

Just a heads-up--this will be an unfiltered blog post, including descriptions of the surgery and post-surgery photos. It isn't gruesome, but it is descriptive. And long. I am hoping that my honesty will help prepare other parents facing the same surgery.

Presurgery

The night before - I don't sleep well at all.

Veronica's surgery is scheduled for 10:15, and we have to be at Children's Hospital in Minneapolis by 8:45. She had to stop eating by shortly after midnight and she had to stop drinking before 7:00AM. We stuffed her full of chili the night before (two adult size bowls) and woke her up at 6:30 to squeeze as much apple juice in her that we could. We had been dreading keeping her awake for so long (1 1/2 hours before her normal wake-up time) without food and drink. She takes some juice and then points to her crib. She wants to sleep. Thank you God for small miracles. We wake her up just in time to put her in her car seat and go.

We check into the hospital. I believe every employee is forced to ask if you have any cold or flu symptoms. Suddenly I have an overwhelming urge to clear my throat and cough. I manage to hold it in.

We wait in the waiting room for about 30 minutes. She has a blast. I feel compelled to take lots of last-minute pictures of my daughter's face the way God made her.

We move to Pre-op. The Child Life expert talks to us about how we can best help Veronica through the surgery and shows Veronica the type of mask that she will breathe the anesthesia through. This becomes the ideal toy. She turns it around and chews on the tube end, with drool oozing through it. It falls on the hospital floor several times. I shamelessly wipe it on my pants and give it back to her. I am hoping there are no super-icky germs. Veronica is completely tired of the pre-op area and the tube distracts her from her empty tummy.

The doctor comes in and says he needs to do another procedure before Veronica's The procedure will take 15 minutes. I smile and think how generous I am with the doctor's time. "Sure, that's fine." I add 15 more minutes to the countdown. I believe I can handle the extra 15 minutes fairly well. I was wrong.

The fifteen minutes stretched to about an hour, with the last 30 minutes being extremely difficult for Veronica. She keeps asking for food and milk. I smile and say, "Later!" in my cheerful voice. I feel like a fraud for not explaining how much later.

I also feel bad because I can't truly explain to my daughter what is going to happen to her. I had told her all the facts, but if someone explained things to me in Chinese, I wouldn't exactly grasp what they were saying, either.

Finally, the anesthesiologist comes in to explain the process he will use. We have taken other children to surgeries, so are comfortable with how things might go. I hold her while she gets put under. She handles things very well. I, however, start to feel very, very sad. With the mask on her, I couldn't see her cute little cleft mouth one more time before I left. The doctor asks if I am okay. I put on a happy face and reassure him that I know he will take good care of my girl, and I do know she will be well taken care of. I was afraid I would burst into tears if I said out loud the reason for the sadness I was feeling.

Surgery

Veronica's surgery was scheduled to last about five hours, and ended up taking about five and a half. First they put in ear tubes. They drain out all the fluid, too. I am pleased to know that her hearing should be in the "normal" range after surgery. This part of the surgery takes about 15 minutes.

Then, the palate is repaired. This is what it looks like before the repair. The doctor says her cleft palate is fairly typical. Not the widest and most difficult to repair, but not the easiest either.

In non-technical terms, to fix a cleft palate the surgeon takes muscle and tissue from around the cleft and attaches it over the cleft. There are arteries running in this area, allowing the newly placed tissue to thrive and grow. Once the materials are moved, there looks almost like channels in the area the tissue was taken from. Amazingly, this tissue grows back.

Veronica had a split uvula, too. (The uvula is the hangy-ball thing at the back of your throat.) The doctor also sewed that together, but her mouth has been too sore for her to open wide enough to see. Later I'll post pictures of the repaired palate, but again, we couldn't get a clear picture because her mouth hurt too much to open. Many times the uvula splits open again, but that isn't a huge deal. Uvula - one of the least necessary body parts.

After the palate repair, the doctor begins the lip repair. This involves attaching the lip muscles from both sides of the cleft as well as putting the cleft-side nostril into position. Our doctor uses a zig-zag stitch to repair Veronica's lip. The lip stitches, along with the palate stitches will dissolve. A clear-type coating is put over her stitches to protect them while they heal.

Most kids with clefts have issues with the cartilage in their nose. Apparently Veronica's cartilage issue is more severe than most. She has one nostril nearly closed after the repair and the tip is very flat, almost non-existent. This will be repaired in another surgery a few years later.

The lip repair takes about two hours.

All the while the surgery is going on, we get updates every hour or hour and a half telling us things are progressing well. This is a very long time to wait and dwell on things that could go wrong. So, my sweet husband and I spend the time reading magazines and entertaining each other with inappropriate humor.

Since lunch is smack-dab in the middle of surgery, we go one floor down to the hospital cafeteria. I'm shocked that the food looks so good. I feel guilty trying to relax and eat while my daughter is going through some pretty invasive procedures upstairs. Since things seem to be going well, I am more apprehensive than worried.

Post-surgery

After Veronica's surgery is done, she is taken to a recovery room where she slowly comes out of anesthesia. We wait in a consultation room for the anesthesiologist. He tells us that she did great, but was belligerent when she came out of anesthesia. Okay, he didn't say belligerent. He said she was really feisty, which is a more polite way to phrase things. Our doctor consults with us about the procedure and what to expect in the next few days. I listen and ask seemingly intelligent questions, but really am just anxious to see my daughter.

Then, she is wheeled into the hallway on a hospital bed where we meet up with her. I didn't know what I had expected upon seeing her, but it in all honesty, I feel a bit of a disconnect. My normally spunky girl is in a daze. She doesn't look like my daughter. I keep repeating in my head, "This is your daughter. This is your daughter." I feel like I have to convince myself. I am surprised I feel this way.

We get to our room, and she is fighting off the remaining anesthesia. She screams for two hours straight. We hold her. We talk calmly to her. I am glad I wore an old, dark colored shirt because she is drooling blood on me. I think nothing I do will ever help. She sweats from the effort of it all. Finally, she wears herself out and sleeps in Ben's arms. Her own arms are in restraints called "no-nos" which are like Velcro splints. These will prevent her from bending her elbows and potentially putting something in her mouth, thus popping stitches and requiring more surgery. She will wear the splints for 2 weeks She is not a fan of the no-nos.

She is on morphine till 10PM. Then she switches over to Tylenol with codeine. She also has ear drops for the tubes in her ears and Amoxiccilian to ward off any potential infections.

While Ben finally has her asleep, I take my shift to get some supper. I am feeling so much more stressed out now than during the surgery. I don't know if I can help her through this. I finish eating quickly and then go to the chapel that is a little ways down from the cafeteria.

I start by thanking God for helping Veronica get through the surgery so well. But then start crying. Not the gentle eye-dabbing kind of tears but the blotchy faced, drippy kind.

Veronica has had three mothers in her life. She has had a birth mother who loved her for the first nine months of her life. She has a foster mother that loved her for the next 21 months of her life. And now she has me who has only been loving on her for barely three months. I wish I could convey to her just how much I truly love her and want to help.

I know when she gets upset, she doesn't always want me to comfort her. I think about my biological kids and how they would not (and should not) immediately love a new mother if they were taken from me. I doubt my ability to be the mother she wants to help her through this.

Since I want to look like I have things under control, I head to the bathroom and splash a bunch of cold water on my face. I take a few deep breaths then head upstairs. I don't tell Ben because he's concerned enough about helping Veronica through this.

Earlier in the day we had decided that I would be the one to spend the night with Veronica. I selfishly want to do this because I need to mother her. I need to feel like she needs me.

It is a long night. I rock her back to sleep after each round of medicine, vital checks, etc. The nurses are wonderful and just doing their job, but I dread each time I hear their footsteps at night. I sleep maybe two and a half or three hours, if you add up all the minutes. I actually don't mind too much. This is my chance to help my fiercely independent girl. I'm beginning to believe she needs me as much as I need her. I am thrilled to learn that my best effort is enough.

She has started drinking apple juice - a great sign that she is on the way to recovery. Most kids don't start eating or drinking the same day as their surgeries.

By 6AM the next morning, I recognize my girl. She has gotten her spunk back. She is eager to eat, drink, and get the IV out of her arm. I try to keep her happy in a two-square-foot area until the nurse is able to disconnect her from her IV bag. She still has the IV in her hand, but she is mobile. And happy at last.

The doctor visits her on his rounds and is incredibly impressed by her progress. My sweet baby girl is amazing! She has eaten pudding and pears and applesauce. (She will be on a soft food diet for two weeks.) She has drunk milk and juice. He says she can go home later today if we are comfortable, or she can stay one more day. We will decide that afternoon.

She spends her morning happily playing in the playroom. She learns to maneuver with her no-nos on. She gets braver and tries climbing on things. I worry how much to let her do because I don't want her to fall on her face and pop open her lip. She can't really brace herself for a fall with the arm restraints on.

We decide she should come home that evening.

I am falling in love with her new little face. She is acting more like her truly delightful self. I am amazed at how quickly she is recovering. While waiting for discharge paperwork from the hospital, she plays peek-a-boo with me. She shows us her first real smile with her new lip.

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